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Old 08-27-2010, 09:15 PM   #21
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Re: any ftt with food allergies?

My DD also has/had EE... confirmed by a scope - several of them actually - but mild only 25 EOS in the esophigits... anyways.. her triggers were dairy, soy and eggs (also IGE allergy to eggs and nuts - hives and ana. reactions)... that's all we knew of anyways... She was FTT and didn't grow at all for about 9 months to a year.. she got to the point where she refused almost everything.. there was a point when I would walk near her with a bottle or pick her up to cuddle her and she would run away from me screaming.. one night I couldn't even get her to drink water from a bottle... - thought we were going to end up in the emergency room with dehydration... anyways... we didn't -- but months later we did end up with an NG tube to do overnight feeds of Elecare - because she wouldn't drink it and wouldn't/couldn't get enough calories in daily with her limited and picky diet... She is still small but has outgrown everything except the nut allergy.. she now can tolerate dairy and cooked eggs... but still every once in a whlie complains of a tummy ache.... usually I can trace it back to something she ate too much of..

I can tell you at one point I was begging for no foods and tube just to figure out what the heck was up and get back to a baseline and start trial foods... dr. didn't want it so we didn't.. eventually we switched dr.s and this dr. pushed for NG tube for supplemental feeds and I was devistated... but in the long run it was the BEST thing we ever did.. she got enough calories - her whole personality changed... (she still didn't sleep at night) but she came out of her shell and awoke to the world really -- she has since become a great eater.. she will try just about everything and eats a ton by herself... she is still tiny -- but thanks to the tube a whole lot closer to the growth chart and is now growing on her own... she will be 4 in 2 months is abot 27 lbs...

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Old 08-28-2010, 06:53 AM   #22
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Re: any ftt with food allergies?

I babysit a boy with EE. He's one of the worst cases that the Hopkins docs have ever seen.

Something his mother said to me that keeps sticking with me was that she fought the g-tube for so long and if she'd just given in sooner her son would have felt much better. If your daughter truly does have EE, get the g-tube- it will keep her from all the pain in her throat and help her gain weight.

I don't have time to read the other posts right now but if you want to talk to my friend she'd be happy to talk. There is also an EE forum where you might find more information.

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Old 08-28-2010, 11:14 AM   #23
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Re: any ftt with food allergies?

Wow this thread is so old! DD has been dx'd with EE but that was over a year ago. SHe is managed quite nicely now and has a small but varried diet including the Neocate Jr. SHe will be 4 in dec.
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Old 08-28-2010, 12:41 PM   #24
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Re: any ftt with food allergies?

DFS is allergic to almost every formula known to man. We finally found a winner in Elecare. He uses it mixed to 27 cal through a G-J. He bulked up to 27 pounds and is now gaining too fast, so we are slowing it down. We tried switching to Peptamin Jr, which is the next "step" above Elecare allergy-wise, but it made him puke.

Good luck mama!
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Old 08-29-2010, 08:43 PM   #25
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Re: any ftt with food allergies?

Just sticking my nose in here. I suspect EE with my little guy. My middle DD had it & out grew it. She lived on Neocate only until she was 3 1/2 yrs old, nothing else by mouth. She just turned 11 earlier this month.

DS can only consume Neocate by mouth. He'll be 8 months tomorrow. Everything else makes him scream & vomit from foods to meds to pedialite. He has to take tylenol by supository. I dread the winter coming since I have no idea what we'll do if he gets sick.

We recently tried Neocate Nutra but he started waking at night every hour & just crying so I'm hesitant to give it another try.

Oddly enough, he's quite big for his age, as was my DD with the same problems. She was always extremely tall & still is. I think his size just confuses the heck out of his drs. I'm not complaining though. I think the size thing may just be genetics since most of my family is taller than average.
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Old 08-30-2010, 06:11 AM   #26
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Re: any ftt with food allergies?

THe little boy I watch is allergic to all the formulas and can't have any of them. He's on amino acids, sugar water, canola oil and vitamins that the parents mix up and then we put into the feeding pump. Nothing but water goes in orally or he gets cranktastic.

He didn't learn to walk until he was 2, has no words (he's almost 3), and has a whole host of other problems.

I didn't know kids could outgrow EE! That's encouraging
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Old 08-30-2010, 08:02 PM   #27
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Re: any ftt with food allergies?

My older daughter has IgG issues with: dairy, soy, corn, eggs, wheat, cherries, oranges, pineapple, oats, blueberries, peanuts.

My younger daughter (IgG): dairy, gluten, corn, eggs, oats, cantaloupe, watermelon, raisins, rice, peaches, tomatoes, potatoes, peppers, peanuts, tree nuts, fish, shellfish and (IgE): soy.

She was 13lb 6oz at her 4 month appt and just last week (9.5 months) she was 15lbs+ at the chiro's office (officialy 15.12 fully clothed with a prefold/cover). She was labeled "FTT" at six months.
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Old 09-02-2010, 10:44 PM   #28
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Re: any ftt with food allergies?

This post is interesting to me. My son is 16lbs at 16 months. We know he has immune issues although his tests came back at the very low end of normal (we still have more tests). He has been dx with stage 4 reflux which has only responded even slightly to Prilosec. He still wakes up at least 3 times per night even now at 16 months.

EE has never been mentioned to me. I trust our GI and Immunologist, so surely they have ruled this out. I just find it interesting that he shows so many symptoms of it, although not all.
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Old 09-03-2010, 06:33 AM   #29
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Re: any ftt with food allergies?

Quote:
Originally Posted by alabamafamily View Post
This post is interesting to me. My son is 16lbs at 16 months. We know he has immune issues although his tests came back at the very low end of normal (we still have more tests). He has been dx with stage 4 reflux which has only responded even slightly to Prilosec. He still wakes up at least 3 times per night even now at 16 months.

EE has never been mentioned to me. I trust our GI and Immunologist, so surely they have ruled this out. I just find it interesting that he shows so many symptoms of it, although not all.
I wouldn't assume that. It's a relatively new disease and even at Hopkins where they see more severe cases of it, it took my friend months to get that diagnosis even though she knew it fit.
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Old 09-03-2010, 07:40 PM   #30
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Re: any ftt with food allergies?

Sarah, you mentioned Hopkins, we live in NJ but my primary dr has refered me there for my allergies. It sounds like they are one of the tops in the allergy world? My middle dd used to go to Mt Sinai for her pedi allergist but my dr felt baltimore would be better suited to me & my allergic reactions.

I have very severe allergies & have given up seeing local drs. It's a 3-4 hours drive each way but I've reached the end of my rope with reactions left & right.

Sorry to get OT but I'm in the process of finding out more for myself (as well as DS, we have a family history of a lot of things).
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